Dancing Eyes Podcast: Recent Episodes
Frankie Caputo
My name is Frankie Caputo and I was born with Nystagmus. I have set out to meet and speak to as many people with Nystagmus as I can and turn it into a podcast. This is that podcast. From how much the condition has affected our lives, to it being a fun party trick, we talk about it all! New episodes will be aired on the first and third Monday of each month!
Vision therapy and syntonics can be used to improve vision and lessen the movements of people with nystagmus. In episode 25 of the Dancing Eyes Podcast, Dr. Julie Steinhaur joins me to discuss her practice and the benefits of vision therapy and syntonics.
Have a consultation with Dr. Julie - https://visiont.krtra.com/t/LSW6qNgzcP9c
Vision Therapy Youtube Channel - https://www.youtube.com/@visontherapy/videos
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputocomedy/
Want to be a guest? https://form.jotform.com/222415937902154
All Links https://linktr.ee/dancingeyespodcast
Email: frankiecaputo@gmail.com
Thank you for watching. I hope everyone enjoys!
In episode 24 of the Dancing Eyes Podcast, Becky, a university student in England and creator of Becky's Blurred Perspective, joins me to chat about her life with nystagmus as well as answer some questions that listeners have sent in. Some questions include "Is it hard to find love with nystagmus"? and "How were your eye movements when you were younger compared to now"?
Becky's Blurred Perspective - https://beckysblurredperspective.co.uk/
Instagram - https://www.instagram.com/beckys.blurred.perspective/
Dancing Eyes Podcast is brought to you by The American Nystagmus Network. The American Nystagmus Network works to improve the quality of life for all persons and families affected by nystagmus through organized community support, education, public awareness, and research. Visit them at https://nystagmus.org/new/
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputo22/
Want to be a guest? https://form.jotform.com/222415937902154
All Links https://linktr.ee/dancingeyespodcast
Email: frankiecaputo@gmail.com
NEW EPISODES ON THE FIRST AND THIRD MONDAY OF EVERY MONTH Thank you for watching.
I hope everyone enjoys!
In episode 23 of the Dancing Eyes Podcast, Cameron joins me to talk about his work as a provisional psychologist and how nystagmus affects his job. We also discuss how living with nystagmus has an affect on our personalities and what we would do if we were given the option to to longer have the condition.
TIMESTAMPS
0:00 Intro/ American Nystagmus Network
1:44 Episode begins/ Cameron talks about being able to relate to previous guests
2:50 The nystagmus related content available online is not satisfying
6:27 How do you mention your nystagmus to others/ Cameron’s organic way of bringing it up in conversation
11:25 It is a relief when you meet someone who already knows what nystagmus is
13:10 How does your nystagmus affect sessions with your therapy patients?
15:42 What led Cameron to working in psychology?
17:30 Has Cameron’s knowledge of psychology helped him cope with his eyes?
18:55 When did nystagmus start playing a role in your life?
22:00 Cameron’s experience with his inability to drive.
26:50 Is the 20/20 system a bad way to measure our vision?
31:35 If you could get rid of your nystagmus right now, would you?
35:30 I love when I am in an environment in which sunglasses are necessary.
37:00 People have thanked me for mentioning my nystagmus to them.
39:10 How has nystagmus affected Cameron’s relationships with women?
42:20 Making jokes about our eyes/ coping mechanisms when passing by people who we can’t see/ comedy talk
54:40 Fun podcast idea
56:50 Cameron’s supportive friend/ awkward visually impaired scenarios
1:02:15 What is some advice for people living with nystagmus?
What is some advice for parents of children with nystagmus?
1:04:20 Closing words
Dancing Eyes Podcast is brought to you by The American Nystagmus Network. The American Nystagmus Network works to improve the quality of life for all persons and families affected by nystagmus through organized community support, education, public awareness, and research. Visit them at https://nystagmus.org/new/
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputo22/
Want to be a guest? https://form.jotform.com/222415937902154
All Links https://linktr.ee/dancingeyespodcast
Email: frankiecaputo@gmail.com
NEW EPISODES ON THE FIRST AND THIRD MONDAY OF EVERY MONTH Thank you for watching.
I hope everyone enjoys!
In episode 22 of the Dancing Eyes Podcast, Chris introduces me to a lot of interesting ideas including new philosophies, how changing the color of our environment can affect our eyes, and how nystagmus affects the way he thinks. He also explains to me some of the things that he has learned from vision therapy including how breathing can affect the movement of our eyes, the usage of prisms, and eye exercises.
TIMESTAMPS
0:00 Intro/ American Nystagmus Network
1:40 Episode begins.
3:35 What gravitated you towards a degree in philosophy? Why do people treat us differently because of our eyes?
5:15 How has nystagmus made you more of a thinker?
7:35 Painting and mindful breathing helps Chris calm his eyes.
9:00 Vision therapy as a way to treat nystagmus. Looking hard vs looking soft.
13:45 Helping our eyes by adjusting the lighting in our environment.
17:50 How can we get less self conscious about our eyes?
20:55 Antifragility
23:25 How is nystagmus an “Invisible disorder”? Getting a job with nystagmus.
29:20 My experience with having lawyers on the podcast
32:00 Nystagmus in comparison to other disorders.
33:30 The benefit of laughing at ourselves.
37:50 PARENTS listen to this.
41:10 Chris was a Ukrainian dancer for 15 years. What kind of effects does dancing have on our eyes?
44:50 Using prisms to treat double vision and nystagmus. More vision therapy talk.
53:40 Syntonic light therapy
57:50 Closing words
Dancing Eyes Podcast is brought to you by The American Nystagmus Network. The American Nystagmus Network works to improve the quality of life for all persons and families affected by nystagmus through organized community support, education, public awareness, and research.
Visit them at https://nystagmus.org/new/
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputo22/
All Links https://linktr.ee/dancingeyespodcast
Email: frankiecaputo@gmail.com
NEW EPISODES ON THE FIRST AND THIRD MONDAY OF EVERY MONTH
Thank you for watching. I hope everyone enjoys!
Through documenting his journeys walking the full length of New Zealand and cycling the border of Tasmania, Mikey has raised thousands of dollars for nystagmus research. In episode 21 of the Dancing Eyes Podcast, Mikey, the creator of Walk for Wiggly Eyes joins me to talk all about it.
Walk For Wiggly Eyes Links
Instagram - https://www.instagram.com/walk_for_wiggly_eyes/
Youtube - https://www.youtube.com/channel/UC1SMD02-pbkHDUAtSrIzw4w/videos
Facebook - https://www.facebook.com/watch/WalkforWigglyEyes/
Dancing Eyes Podcast is brought to you by The American Nystagmus Network. The American Nystagmus Network works to improve the quality of life for all persons and families affected by nystagmus through organized community support, education, public awareness, and research. Visit them at https://nystagmus.org/new/
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputo22/
All Links https://linktr.ee/dancingeyespodcast
Email: frankiecaputo@gmail.com
NEW EPISODES ON THE FIRST AND THIRD MONDAY OF EVERY MONTH Thank you for watching. I hope everyone enjoys!
Chad was born with Congenital Nystagmus and also happens to be a great skateboarder. In episode 20 of the Dancing Eyes Podcast, we discuss stand up comedy, tattoos, having a twin with nystagmus, Chad's experience with skateboarding and a lot more!
Dancing Eyes Podcast is brought to you by The American Nystagmus Network. The American Nystagmus Network works to improve the quality of life for all persons and families affected by nystagmus through organized community support, education, public awareness, and research. Visit them at https://nystagmus.org/new/
Chad's Instagram: https://www.instagram.com/chaddisfaction/
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputo22/
All Links https://linktr.ee/dancingeyespodcast
Email: frankiecaputo@gmail.com
NEW EPISODES ON THE FIRST AND THIRD MONDAY OF EVERY MONTH Thank you for watching. I hope everyone enjoys!
In episode 19 of the Dancing Eyes Podcast, Maki joins me to discuss their experience living with nystagmus.
This episode includes topics such as Maki's experience with their null point corrective surgery, music, school, contact lenses and a lot more!
Dancing Eyes Podcast is brought to you by The American Nystagmus Network. The American Nystagmus Network works to improve the quality of life for all persons and families affected by nystagmus through organized community support, education, public awareness, and research.
Visit them at https://nystagmus.org/new/
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputo22/
All Links https://linktr.ee/dancingeyespodcast
Email: frankiecaputo@gmail.com
NEW EPISODES ON THE FIRST AND THIRD MONDAY OF EVERY MONTH Thank you for watching.
I hope everyone enjoys!
Today we celebrate the 1 year anniversary of the Dancing Eyes Podcast!
Thank you to everyone who has joined me on the show and thank you to anyone who has ever listened to an episode!
This episode is a compilation of some of my favorite moments in the podcast. (I have somehow lost the footage from episode #3 and unfortunately couldn't use anything from there).
Dancing Eyes Podcast is brought to you by The American Nystagmus Network. The American Nystagmus Network works to improve the quality of life for all persons and families affected by nystagmus through organized community support, education, public awareness, and research. Visit them at https://nystagmus.org/new/
Chris is a sports broadcaster, a professor and a father. In episode 17 of The Dancing Eyes Podcast, we discuss his career in broadcasting and a lot more!
Timestamps for conversations are available below.
TIMESTAMPS
0:00 Intro/ American Nystagmus Network
1:08 Chris’s career in sports broadcasting
15:00 Sports talk
30:30 How does your nystagmus affect your career/ transportation?
37:00 How did nystagmus affect your childhood/ how did you find out about it?
46:15 Chris played football in high school without glasses/ other sports he played.
49:30 Calming down our eyes/ advice on dealing with nystagmus
Dancing Eyes Podcast is brought to you by The American Nystagmus Network. The American Nystagmus Network works to improve the quality of life for all persons and families affected by nystagmus through organized community support, education, public awareness, and research.
Visit them at https://nystagmus.org/new/ Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputo22/
All Links https://linktr.ee/dancingeyespodcast
Email: frankiecaputo@gmail.com
NEW EPISODES ON THE FIRST AND THIRD MONDAY OF EVERY MONTH Thank you for watching. I hope everyone enjoys!
In episode 16 of The Dancing Eyes Podcast, Nate joins me to discuss how having nystagmus affects fatherhood. We also talk about finding meaning in life, as well as coping with our nystagmus and many other topics.
Dancing Eyes Podcast is brought to you by The American Nystagmus Network. The American Nystagmus Network works to improve the quality of life for all persons and families affected by nystagmus through organized community support, education, public awareness, and research.
Visit them at https://nystagmus.org/new/
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputo22/
All Links https://linktr.ee/dancingeyespodcast
Email: frankiecaputo@gmail.com
NEW EPISODES ON THE FIRST AND THIRD MONDAY OF EVERY MONTH Thank you for watching. I hope everyone enjoys!
In episode 15 of The Dancing Eyes Podcast, Sam joins me to have a laid back conversation about a wide variety of things including our eyes, music preferences, and elephants that can paint.
Dancing Eyes Podcast is brought to you by The American Nystagmus Network. The American Nystagmus Network works to improve the quality of life for all persons and families affected by nystagmus through organized community support, education, public awareness, and research.
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputo22/
All Links https://linktr.ee/dancingeyespodcast
Email: frankiecaputo@gmail.com
NEW EPISODES ON THE FIRST AND THIRD MONDAY OF EVERY MONTH Thank you for watching. I hope everyone enjoys!
In episode 14 of The Dancing Eyes Podcast, I have 6 parents joining me to talk about their experience raising children with Nystagmus.
Greg, Michele, Domenica, Tonya, Jen and Shari (my mom) share stories and tips about parenting a child with Nystagmus.
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputo22/
All Links https://linktr.ee/dancingeyespodcast
Email: frankiecaputo@gmail.com
NEW EPISODES ON THE FIRST AND THIRD MONDAY OF EVERY MONTH Thank you for watching. I hope everyone enjoys!
Alessio talks to me about his experience living with Nystagmus and Cerebral Palsy. We discuss his experience playing on multiple soccer teams, his 3d printed designs, his recently completed half marathon, and a lot more!
Alessio's Instagram: https://www.instagram.com/the_disabled_designer/
Alessio's Half marathon footage: https://www.instagram.com/p/CaxQj9sot4cBhYmLaWKtOeGg37q-t5xFkm3rUo0/
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputo22/
All Links https://linktr.ee/dancingeyespodcast
Email: frankiecaputo@gmail.com
NEW EPISODES ON THE FIRST AND THIRD MONDAY OF EVERY MONTH
Thank you for watching. I hope everyone enjoys!
Alyssa is a freshman in college and was born with congenital nystagmus.
She is currently in school for music education and she enjoys opera and musical theater.
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputo22/
All Links https://linktr.ee/dancingeyespodcast
Email: frankiecaputo@gmail.com
NEW EPISODES ON THE FIRST AND THIRD MONDAY OF EVERY MONTH Thank you for watching. I hope everyone enjoys!
Ellie is a senior in high school and was born with congenital nystagmus. In this episode we discuss some tips on living with nystagmus and we also discuss a controversial post in the American Nystagmus Network's facebook group from about a month ago. We discuss a lot more as well.
Podcast Instagram: https://www.instagram.com/dancingeyespodcast/
Personal Instagram: https://www.instagram.com/frankiecaputo/
All Links https://linktr.ee/dancingeyespodcast
Email: frankiecaputo@gmail.com
NEW EPISODES ON THE FIRST AND THIRD MONDAY OF EVERY MONTH Thank you for listening. I hope everyone enjoys!
In episode 10 of The Dancing Eyes Podcast, Alex joins me to talk about his experience living with Nystagmus. He is a freshman in high school and just competed in his first Deca competition. Timestamps for conversation topics are listed below. TIMESTAMPS 0:00 Introduction 01:05 Episode begins 01:35 Alex backstory 03:35 Involvement with American Nystagmus Association 04:35 Doctor stories/ playing sports 07:35 Head tilt/ zoom calls 09:45 Avoiding head tilt while having conversations or pictures/ looking for Nystagmus sources as a teenager 14:30 Creation of the podcast/ logo design 16:25 Do you consider Nystagmus to be a disability? 18:30 What other conditions do you have? 19:05 Alex’s experience with his first Deca competition/ involvement of Nystagmus in the competition 31:35 Bringing up the Nystagmus when meeting new people/ difficulties making friends/ school experiences 37:45 Obtaining a driver's license 38:40 I demonstrate the eye exercises that I have been doing 42:30 Back to the driving talks/ technology and Nystagmus 48:15 504 plan/ school accommodations 50:45 Alex’s Nystagmus conference experience/ public speaking 58:20 Nystagmus in Alex’s family 59:55 My experience with procedures on my eyes (Kestenbaum and lasik) Podcast Instagram: https://www.instagram.com/dancingeyespodcast/ Personal Instagram: https://www.instagram.com/frankiecaputo22/ NEW EPISODES ON THE FIRST AND THIRD MONDAY OF EVERY MONTH Thank you for watching. Hope you guys enjoy :)
This has to be one of my favorite conversations so far in my journey of the Dancing Eyes Podcast. John Paul was born with Congenital Nystagmus and is currently an audio engineer. We discuss his profession as well as some philosophy. Our conversation for this episode may have been a little different from the usual, but I enjoyed it very much and I hope you guys do too!
Talene joins me today to discuss a lot of topics that I find interesting. We talk about how meditating affects the movement of her eyes. She also shares her experience with acupuncture for her Nystagmus and a lot more!
Mitchell is a filmmaker from Scotland who was born with Congenital Nystagmus. In this episode we talk about how Nystagmus affects his ability to write and star in his own movies. We also talk about how Nystagmus affected his childhood and a lot more! Here is a link to his most recent film. https://www.youtube.com/watch?v=5rorfGDx5p4&t=15s
Chloe is a high school student who was born with Congenital Nystagmus. In the 6th episode of the Dancing Eyes Podcast she shares with me how the condition has affected her life. We talk about struggling to look people in the eyes, her high school experience, and I may have spoken about Shrek too much.
Pip currently lives in The Netherlands and she was born with congenital Nystagmus. In this episode Pip shares with me her experience of growing up with parents who were not very tolerant of her Nystagmus. We go into what roles parents play in their child's ability to adapt to their Nystagmus and share a few tips.
Brandon was born with Congenital Nystagmus and is currently living in California. In this episode we talk a lot about becoming more comfortable with our eyes and with who we are as a person. Brandon and I share some advice on overcoming bullying ,as well as talk about our hobbies, and a lot more!
Lauryn is a college student who was born with Congenital Nystagmus. In this episode she shares her tips for driving, school and a lot more. We also share some of our stories and experiences from growing up with Nystagmus.
Today Haley joins me to discuss her experience with Nystagmus. She was born with Congenital Nystagmus and is currently studying law in Philadelphia. Video format is also available on youtube.
Podcast Instagram- https://www.instagram.com/dancingeyespodcast/
Personal Instagram- https://www.instagram.com/frankiecaputo22/
Thanks for listening!
For episode 1 of The Dancing Podcast, Erik joins me to talk about his experience with Congenital Nystagmus. We talk about state troopers thinking he is high, wacky ideas that have been presented from doctors, and a lot more!